J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


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Wednesday, December 31, 2008

Miralax, infomercials, blankies

My ,oh so productive, morning of drinking coffee, googling, and breaking up fights was interrupted bright and early.

I get a phone call.

Through the static all I can hear is someone mumble:

"Miralax."

I question the caller:

"what?"

caller:

"Miralax"

I respond:

"not today,I am actually feeling pretty good."

I pause and think about it. Oh this is Lisa, my sister in law. I soon decipher, Miralax is actually "mailbox."

See she watched Jake yesterday, so I could go to a funeral of a student mine.

Diastat is my copilot. It goes with me everywhere. I took it to her house yesterday and at about 3:00am I broke out in a sweat, realizing, I had no diastat in the house. So from this point on I was certain Jake was gong to have a tc and I would have no way to save him.

Her call this morning was to tell me that the diastat would be in her mailbox, so I could go get it.
She was not a random caller reminding me to take my Miralax.
Phew, because that would have been awkward.


Infomercials


The other day, Addison sat on the family room watching some cartoons. I walk in to sit by her and states, in an oh so definite manner

" You need that so you can finally get this house clean."

"What?" She points to the tv and proceeds to tell me why I indeed need the steam shark, or some similar gadget.


I had forgotten about that incident, until last night and again this morning.


Last night, Addi is again watching the tube. She calls me in to catch a glimpse of the "greatest thing that I really need!"


I am certain, now that after the cleaning remark she is going to suggest some cellulite thigh cream. See when I am wearing shorts she shakes my thighs or smacks my booty and tells me "Momma, you're getting old." I asked "why do you say that?" She matter of factly states "because your butt and legs are jiggly and have holes."


Nothing like a 5 year old to boost your self confidence.


To my surprise, she was not telling me I needed cellulite cream, she was telling me I needed the Ultimate Snuggle Blanket. This is the blanket that your basically get inside of, but you have still have mobility to do things such as :

answer the phone

read

pet the dog


Apparently Addison thinks it is best suited for me in a different way.


She tells me" If you get that you can still clean and be warm."


So not only am I getting old and fat, but my house is also a mess.


She apparently saw the look of anguish on my face because she then tells me, "It's better than a blanket, because it won't slip off." "That's why you need it. It's also for parents, brothersand sisters."


This morning, as I am accomplishing much of nothing on the computer, with Jake on my lap, he starts saying "Yummmmy, ummmm, that looks good."


I turn to see what he is watching and it is the one and only Big City Slider. Some device that makes "food better than mine." (as Jake informed me)


Infomercials have quickly become dreaded around this house. I am terrified to find out what other flaw in my life the kids can point out!


The Blankie


Just a tad bit of randomness, that really confuses, the personal at the many hospitals, clinics, and EMTS.


See this summer Jake's cousin, Chad, left his blankie over here. this is blankie is just like the 4-5 blankies Jake has, except it has Chad monogrammed in the corner.


Jake soon took upon himself to claim this blankie as his own. Going so faras to hide the "Chad blankie" when Chad was visiting us, so Chad would not take it back.


We made the mistake the first hospital stay, by not bringing "Chad's blankie." Jake cried, and cried and cried for Chad's blankie. Matt finally went home late one night to fetch the blankie. Jake got t in his hands and instantly wen tto sleep.


The next trip we were bright enough to bring the coveted blankie, however it caused much confusion. See as nurses and dr.s walk in to examine Jake they quickly would apologize, "that they have the wrong room." All they could see was a little boy, with iv's, that was supposed to be Jake, covered in a blue blanket bearing the name "Chad." Obviously they had the wrong room.


Now, it is Jake's obsession to find the monogrammed name and rub it on his face.

Many nights, very late, we will hear Jake stir,and then scream out, in such an awful whining voice "I can't find Chad's name." One of us, usually me, will go in Jake's room, to find him, turning the blankie to every corner looking for the name.


God Bless this "Chad's blankie" because it has surely saved us many tears, as we now keep it very close by, especially on trips to the er.


I am concerned, though, as this blankie has been through so much. It has been thrown up on, peed on, bleed on numerous times, and "Chad's" monogrammed name is now becoming unraveled.


I can't stomach the thought of what is going to happen when this blankie dies. It has been through so much. I guess I could always take one of Jake's identical blankie and monogram Chad's name on it!?


Laughter rises out of tragedy, when you need it the most, and rewards you for your courage.


GodBless~Christine

3 comments:

Lisa A said...

Laughing and Crying....
Don't you think that blanket is the same thing as a robe on backwards?? I put mine on backwards the other day and showed the kids-look I got a snuggie.

maybe you could get the to re-embroider Chad's name??

Brandy said...

You are right, Lisa - it is a robe on backwards! Have you seen the infomercial actors at a ball game with it on? Hilarious!!! That is too funny! I love the Chad blankie thingy - that is too cute!

Oh, don't forget your miralax...

Julie said...

I am just laughing at how Addi said you have holes in your legs!! She is not invited this summer when we go swimming! :)